4/18/2018. Precise Delivery of Education to Newly Diagnosed Pediatric Oncology Patients & Families: A Quality Improvement Initiative

Transcription

1 Precise Delivery of Education to Newly Diagnosed Pediatric Oncology Patients & Families: A Quality Improvement Initiative Michelle Fritsch, LMSW-ACP Is our patient & family new diagnosis education sufficient? What do the patient & families need to know??? Literature Review Medical Professional Think New Family Need: Education Prior to Initial Hospital D/C What Parents reported was Taught Before D/C What parents WANTED Diagnosis Emergency Phone # How to give child oral meds Fever Fever What to do if child vomits after oral med Prognosis Need to go to hospital if fever develops Clinic Routine Side Effects Medications - schedule, dosing, Needle size for port access Who/How to call How to administer injections Precautions for Sibs When/Why call Not to give over the counter meds Precautions for visitors at home Clinical trials Neutropenic Precautions Diet precautions (wash fruit really well means?) Manage Medications Thrombocytopenic precautions Support Groups through social media and in person Central Line Care Care of Central Line Care of Child at Home Hygiene Supportive Care Hand washing Health Team Members Oral care and diet if mucositis develops 1

2 What Medical Professionals Think Newly Diagnosed Families Need To Know: Diagnosis Fever Prognosis Side effects Who/how to call When/why to call Clinical trials Manage medications Care of central line Care of child at home Supportive care Health team members Families Report What Was Actually Taught: Emergency phone # Fever Need to go to hospital if fever develops Medications - schedule, dosing, How to administer injections Not to give over the counter meds Neutropenic precautions Thrombocytopenic precautions Care of central line Hygiene Hand washing Oral care and diet if mucositis develops What Families Wanted to Know: How to give child oral meds What to do if child vomits after oral med Clinic Routine Needle size for port access Precautions for sibs Precautions for visitors at home Diet precautions Support groups through social media and in person 2

3 Texas Children s Cancer & Hematology Faculty/Staff Polled What is the most important topics families MUST be taught in the first 4 6 weeks after diagnosis? Survey of all Texas Children s Cancer & Hematology Centers (TXCH) clinical staff to inquire top 5 topics for Safety and Coping. 106 responded. 3 parents sent survey. Preliminary family review. Top 5 Topics - Safety When and how to call Manage medicines Manage fever Who on treatment team Name, stage, diagnosis Top 5 Topics - Coping Treatment plan Prognosis Know who to talk to about siblings, etc Pain management Activity restrictions 3

4 Communication Goals Plan Do Study Act adapted from The Institute for Health Care Improvement PDSA Setting Aims The aim should be time-specific and measurable; it should also define the specific population of patients or other system that will be affected. Establishing Measures Teams use quantitative measures to determine if a specific change actually leads to an improvement. 4

5 PDSA Selecting Changes Ideas for change may come from those who work in the system or from the experience of others who have successfully improved. Testing Changes The Plan-Do-Study-Act (PDSA) cycle is shorthand for testing a change in the real work setting by planning it, trying it, observing the results, and acting on what is learned. This is the scientific method adapted for action-oriented learning. Plan Do Study Act PDSA provides a straightforward approach to quality improvement. Framework is easy What are we trying to accomplish How will we know that a change is an improvement? What changes can we make that will results in improvement? Plan Do Study Act PDSA Plan: develop the initiative Do: implement your plan Study: check the results Act: make further improvements 5

6 PDSA #1 Steps 1. Survey data 2. Develop questions PDSA # 1 (June 1 Oct 20, 2017) Objectives Survey TXCH faculty/staff regarding their thoughts on what families should know post diagnosis (4 6 weeks after diagnosis). Develop questions that reflect the topics our staff determined were important for families to know post diagnosis. Revise survey based on 3 families validation and input. Findings PDSA #1 We are able to develop questions that reflect the topics our staff determined were important for families to know post diagnosis. Families are willing and able to validate the survey for us. Survey can be translated by our translation department 6

7 PDSA Cycle #2 Steps 1. Revise questions 2. Identify & orient family advisors 3. Validate questions 4. Develop the process for identifying target participants PDSA # 2 (Oct 20 Dec 21, 2017) Objectives Are their parents who will be willing to serve on our family advisor team? Can we orient them through our hospital s Family Centered Care Program? Will they be able to validate the questions/give feedback? Are we able to identify patients? Which patients were recently diagnosed? Findings PDSA #2 Families are willing to participate. The sample strategy captured most newly diagnosed patients We can identify patients t with the help of the epidemiology group. We need someone designated to the collection of these questionnaires (staffing challenges) 7

8 PDSA Cycle #3 Steps 1. Approach and survey newly diagnosed families with leukemia PDSA # 3 (Dec 21, Present) Objectives Are we able to administer the questionnaire? Begin with newly diagnosed leukemia patients Are we able to add another target population (diagnosis) to the research? Findings - PDSA #3 Families want more education. Families need more support. Families do not know how to identify their physician. 8

9 Demographics PDSA Cycles Oct Dec 2017 (PDSA #3) # surveys Diagnoses % Leukemia 100% 100% % Brain tumors Who completed the survey? % Mother 100% 75% % Father 0 25% Location of survey % Hospital 18% % Clinic 45% 31% % Phone 36% 69% Location of diagnostic talk % Hospital 100% 81% % Clinic 0 19% Survey language % English 73% 88% % Spanish 27% 12% Jan March 2018 (PDSA #4) Do they know their medical team? Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Who is your doctor16 Answered with an attending 5 (45%) 9 (44%) Answered wrong (fellow, APP, first name only) 3 I don t know? 3 7 (56%) Who is your Nurse Coordinator Answered with a NC for the appropriate team 8 (73%) 10 (62%) Answered wrong (name that is not a NC or on the wrong team) 0 I don t know / I don t have one 2 6 (38%) Who is your Social Worker Answered with a SW for the appropriate team 4 (36%) 6 (38%) Answered wrong (name that is not a SW or a SW from the wrong team) 1 I don t know / I don t have one 6 10 (62%) Interactions with the medical team Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Answered questions/concerns Yes, all or most 11 (100%) 16 (100%) No, some or struggling Blank Know who to call 11 (100%) 16 (100%) Yes, know who and when to call 9 13 Yes, sometimes 2 2 No, some or struggling Blank Had to reach team Yes 6 13 (81%) Problems No problem 6 Right person 2 Call back 1 1 Question 1 Did not help 2 other 9

10 Home Medications Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Give medicine at home (yes) Comfort with giving medication 11 (100%) 15 (94%) Comfortable 6 10 Learning 5 4 Uncomfortable 0 1 Vomit medications 6 (55%) 8 (50%) Never missed or vomited 1 4 Comfortable with what to do 5 4 Uncertain 5 (45%) 3 (19%) Confused 0 5 (31%) Next Treatment Steps Oct Dec 2017(PDSA #3) # surveys Jan March 2018 (PDSA #4) Comfort with what is happening next 8 (73%) 13 (81%) Fully understand 4 Comfortable 4 13 Managing day to day 3 2 A lot of questions/completely confused 0 1 Pain Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Did child have pain? 10 (91%) 8 (50%) Yes 10 8 No 1 8 Adequately managed? 9 (82%) 6 (75%) Yes 9 6 Some 1 1 No 0 10

11 Thermometer at Home Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Do you have a thermometer at home? 10 (91%) 15 (100%) Yes No 1 Food Insecurity / Money Oct Dec 2017 (PDSA Jan March 2018 (PDSA #4) #3) # surveys Worried that won t be able to feed 4 (34%) 6 (38%) family? Yes 4 6 Worried won t have enough money 6 (55%) 11 (69%) Yes 6 11 Know who to talk to about not having enough food or money (0%) 11 (69%) Yes 0 11 Comfort with medical bills 6 (55%) 11 (69%) Yes 1 3 Have questions 5 8 Uncomfortable 3 5 Who to talk to about medical bills (0%) 6 (38%) Yes 0 6 Educational Materials Oct Dec 2017 (PDSA #3) # surveys Received COG handbook 1 (9%) 8 (50%) Yes 1 8 No 7 8 I don t know 3 Was COG handbook helpful Yes 1 5 Want future educational materials Paper Internet 4 5 Phone 0 3 Jan March 2018 (PDSA #4) 11

12 Support Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Parking Wanted and received 5 (45%) 7 (44%) Wantedand did NOT receive 6 9 Received dbut did not use 0 0 School Wanted and received 2 (33%) 4 (40%) Wantedand did NOT receive 4 6 Received but did not use Support for other children Wanted and received 2 (50%) 3 (50%) Wantedand did NOT receive 2 2 Received but did not use 0 1 Support Oct Dec 2017 (PDSA #3) Jan March 2018 (PDSA #4) # surveys Support for families Wanted and received 0 (0%) 2 (29%) Wantedand did NOT receive 0 3 Received but did not use 0 2 Education Wanted and received 1 (9%) 1 (7%) Wantedand did NOT receive Received but did not use 1 Support for me Wanted and received 0 (0%) 3 (25%) Wantedand did NOT receive 9 8 Received but did not use 0 1 Support for child Wanted and received 0 (0%) 1 (7%) Wantedand did NOT receive Received but did not use 0 1 Plan, Do, Study, Act Plan: research Do: surveys Study: analyze results Act: make further improvements 12

13 Discoveries Families need more support Families do not know how to identify their physician, team members Families want more education Strategies for Improvement Families need more support Social Work including support group information, supportive organization information at diagnosis Provide support information in the clinic wall display Advertise groups, organizations etc. in the infusion room and on inpatient setting Strategies for Improvement Families do not know how to identify their physician, team members Fact Sheets Meeting Your Team Fact Sheet on Call Us Medical team must introduce self at each interaction; use name. Climate change 13

14 Strategies for Improvement Families want more education Include more education at diagnosis Have libraries of educational materials and resource information at clinic pods and inpatient Use wall display to showcase lots of materials/resources Use nursing critical competencies time to showcase the educational materials so nursing is knowledgeable and able to provide the materials. Identify family preferences for patient & family education Educational Materials Showcase Showcase Specifics Jelly bean voting Survey regarding support services 58 participants p 3 separate days/times 5 parent advisor (volunteers) 14

15 Interactive Survey Text MICHELLEFRIT468 to Text answers Style of Binder 1. Vote for which style of binder you would prefer a. Soft b. Hard c. Paper d. Accordion Style Style of Binder 15

16 Style Family Preferences WINNER 61% 16

17 Content 2. Vote for which content you would prefer: a. General information about cancer b. Local information c. Both Content 17

18 Content - Family Preferences WINNER 61% Style of Publication 3. Vote for which style of educational materials you would prefer: a. One page document (ex: leukemia) b. Publication put out by professional group c. APHON publication 18

19 Style of Publication Publication Family Preferences 19

20 Style of Publication - WINNER 40% 40% Beyond Diagnosis 4. Beyond Diagnosis a. Beyond Diagnosis Guidebook (bound) b. Beyond Diagnosis Guidebook (spiral) c. Fact Sheets d. Online Version Beyond Diagnosis 20

21 Information about Resources Family Preferences Beyond Diagnosis 70% 21

22 Would like information School coordination/information about services o o Would NOT want Educational materials regarding diagnosis, o o general medical topics Talking with my other children about my child s o o medical condition Talking with my other family members about my o o child s medical condition Connection to support & resources for me o o (support groups, counseling, etc) Connection to support for my child (camps, o o social events) Information about food assistance programs o o Information about how to manage medical bills o o Support Services Requested 22

23 Patient and Family Education Nook Patient and Family Education Nook 23

24 Beyond Diagnosis Usage References Institute for Health Care Improvement Hockenberry, M.; Rodgers, C. Understanding effective delivery of patient and family education in pediatric oncology: a systematic review from the children s oncology group APHON; 33 (6). Longnecker, H. Doctor- Patient communication: a review Spring; 10(1): Comments/Questions 24